Published on May 11, 2023 | Last month, PKD advocates from coast to coast participated in Virtual Advocacy Day 2023. Through virtual meetings, patients, friends, researchers, and PKD Foundation staff united to share our community’s needs with Congress. For those who couldn’t attend, answers to these three questions will catch you up.
1. What Did Advocates Discuss on Virtual Advocacy Day 2023?
Prior to taking part in Congressional meetings, participants took place in training to highlight three key priorities with their elected officials. Firstly, maintain and increase federal investments in PKD research. Specifically, through the Department of Defense’s Peer Review Medical Research Program (CDMRP) under the Congressionally Directed Medical Research Program (PRMRP). Secondly, support passage of federal living donor protections that would remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability, or long-term care insurance to living donors And finally, elevate and address the consequences of racial disparities in kidney disease diagnosis, treatment, and access to transplantation, particularly for PKD. Meaning, passing forthcoming legislation that would improve data collection and transparency in kidney transplantation.
“Participating in my first virtual advocacy day was an incredibly powerful experience. I expected it to be challenging and complex, but I was encouraged by the excellent training and practice provided. I felt like I was really able to make a difference for our communities while working alongside my PKD Foundation colleagues, CURA, and our Advocacy Champions Network. Most importantly, I was proud to advocate on behalf of PKD patients and help raise awareness for the Living Donor Protection Act, racial disparities in kidney and transplant care, and support funding for critical PKD research.”
—Joy Branch-Smith, PKD Foundation Marketing Specialist
2. How Many People Participated?
For Virtual Advocacy Day 2023, 92 members of our PKD community joined our advocacy partners, CURA Strategies. Together, they shared their voices in 110 Congressional meetings, representing 30 states and one US territory.
3. What Comes After Virtual Advocacy Day 2023?
Just over a week after Virtual Advocacy Day 2023, the Living Donor Protection Act was reintroduced to Congress. Congressman Jerrold Nadler (D-NY), Congressman Troy Balderson (R-OH), Congresswoman Lisa Blunt Rochester (D-DE), Congressman Jim Costa (D-CA), Congressman John Curtis (R-UT), Congresswoman Diana DeGette (D-CO), Congresswoman Mariannette Miller-Meeks (R-IA), and Congressman Gregory F. Murphy, M.D. (R-NC) were joined by Senator Kirsten Gillibrand (D-NY) and Senator Tom Cotton (R-AR) to announce it’s reintroduction.
What is the Living Donor Protection Act?
First introduced during 113th Congress (2013-14), Living Donor Protection Act (LDPA) addresses insurance discrimination. After it’s initial introduction by Rep. Jerry Nadler (D-NY-10), it’s been introduced four more times. However, it’s yet to pass Congress and be signed into law. Through it’s passage, the LDPA prohibits discrimination in insurance practices based on an individual’s status as a living organ donor. This includes the offering, issuance, cancellation, breadth of coverage, price, and any other condition of a life insurance policy, disability-insurance policy, or long-term-care insurance policy. Additionally, the LDPA federally designates recovery from organ-donation surgery as a serious health condition. Private-sector and federal employees would be entitled to necessary medical leave. Why is that so important? Living organ donors could use time granted through the Family and Medical Leave Act (FMLA) to recover from their gift of donation. With the vital need for more organ transplants, this will undoubtedly result in better outcomes and reduced barriers to transplants. Especially the 90,000 patients waiting for a kidney transplant.
How You Can Help
In order to continue momentum from Virtual Advocacy Day 2023, you can connect your elected officials to ask for support. Let your Members of Congress know that you support the Living Donor Protection Act’s passage. To make things easy, enter your information here to automatically send an email to your representatives with wording about supporting the LDPA. Sign up for the Foundation’s Advocacy Alerts so you know when to reach out for support. Feeling energized by Virtual Advocacy Day? Consider joining the Advocacy Champions Network. This dedicated group of advocates engages with Congress year-round to raise awareness for PKD. Learn more about how to apply here.
Though Virtual Advocacy Day 2023 has come and gone, our work never stops. Becoming an advocate for PKD can be as big or a small as you want. Whether it’s emailing your elected officials, or simply sharing your PKD journey on social media, you can make an impact.
The PKD Foundation Virtual Advocacy Day 2023 was made possible by a grant from Otsuka America Pharmaceutical, Inc.